In response to Amanda Lauren’s XOJane piece suggesting her mentally ill friend’s death was a “blessing.”
Content warning: suicide; ableism; mental illness; abuse; caregiver abuse; psychiatric commitment; violence; dead bodies
If you are in suicide crisis, please call the National Suicide Hotline at 1 (800) 273-8255.
If you are a victim of sexual assault in crisis, please call RAINN at 800.656.HOPE (4673).
The first time it happened, a stranger in Prairie Lights bookstore in Iowa City called me “the second coming.” He was pointing to a display of tote bags and t-shirts printed with Virginia Woolf’s portrait.
“That could be you,” he said.
He didn’t know I was a writer. He didn’t know I was sexually abused by a half-brother, just like Virginia. That I am Bipolar, just like Virginia. That I have tried to commit suicide, more than once, just like Virginia.
He meant second coming in body, not mind.
But I saw the dissociation in that portrait, how she floated out of her body. That’s what he sees, too, I thought. He sees I am not all here.
“I feel certain I am going mad again,” I say. I am reading Virginia Woolf’s suicide note to my husband, the one she wrote for her husband. I have been studying suicide notes–their art and craft, their rhetorical strategies, what it means to write them, to not write them.
I feel we can’t go through another of those terrible times. And I shan’t recover this time. I begin to hear voices, and I can’t concentrate. So I am doing what seems the best thing to do. You have given me the greatest possible happiness. You have been in every way all that anyone could be. I don’t think two people could have been happier till this terrible disease came. I can’t fight any longer. I know that I am spoiling your life, that without me you could work. And you will I know. You see I can’t even write this properly. I can’t read. What I want to say is I owe all the happiness of my life to you. You have been entirely patient with me and incredibly good. I want to say that – everybody knows it. If anybody could have saved me it would have been you. Everything has gone from me but the certainty of your goodness. I can’t go on spoiling your life any longer.
I don’t think two people could have been happier than we have been.
“She sounds just like you,” my husband says. “You have said the same words.”
I wrote my first suicide note in 1990. Notebook paper, ballpoint pen, folded and hand-delivered to a friend at school.
“Read it later,” I said. She didn’t know it was an advanced directive: no life saving measures.
I wish I had that note now. I want to know why I did it. Or why I thought I did it. Or what I wanted people to think about why I did it.
Who doesn’t remember their own suicide note?
Lately I can’t think. I can’t read. My eyes skip around l-t-e-t-ers, fill in blanks like Mad Libs. I am dizzy. I can’t walk in a _______ ______. I stumble with my walking cane like I am ______. All day: an electric hum in my ear. bzzzzzzz bzzzzzzz bzzzzzzzzzz the appliances are talking to me.
“I feel like someone who used to be smart,” I tell an old writing mentor. He says I am still smart, but I think: He hasn’t seen me in a long time, hasn’t read my work in a long time. He doesn’t know. A seizure last winter cracked two molars, knocked tooth 19 out of place. Rattled my brains.
I start books and can’t _________. I start essays and can’t _______. I grind batches of bone black ink that go rancid before I can use them. I can’t control a pen like I used to.
My signature changes every day.
Look how the line from the H stabs at “Karrie” like a spear. I cross out my own name. Graphologists call it scoring, cutting. It means suicidal ideation, but how can I know, when I can’t control the pen?
I receive radio transmissions from Saturn.
(transcript at link)
Or is it the tinnitus? Or is it a seizure? Or is it mania?
I feel certain I am going ______. I can’t _____ this time.
I’ve a very low opinion of my writing at the moment. This comes of correcting proofs: it’s all bounce and jerk; I want to spin a thread like a spider.
— Virginia Woolf, 5 August 1927, letter to Vita Sackville-West
I can’t sleep without pills.
On nights when I swallow my amitryptiline, down down down the rabbit hole I fall, landing at the portal to apartment “A,” where my brother Greg died three days before facing trial for sexual abuse in the 2nd degree.
My brother answers, a Marlboro Red dangling from his lips. He recognizes me even though he hasn’t laid eyes on me for twenty-five years. He smashes out his cigarette, yanks me across the threshold by my wrist. Inside, he pins me against the wall, leans in, licks my teeth the way he always did.
Sometimes, I force my way in. “Shhh,” I say when he protests. “I am all grown up. You can’t get arrested anymore.” This time, I pin him against the wall. I leave the door wide open. “Nobody knows I’m your sister.”
Or it plays out like this: He suspects the cops sent me undercover with a wire tucked into my bra or a transmitter concealed under a tooth cap. I strip out of my clothes, shoes to bra, to prove I am not a secret agent. I open my mouth wide, let him swab my teeth with his index finger and yank on my root canal crowns. He kneels, wraps his arms around my legs, and cries. I stroke his cowlick and whisper, “Don’t kill yourself. Don’t die. Let me save you.”
“I am jealous of your tidy ending,” a friend says. “His death was a blessing.”
“He wasn’t a suicide guy,” his Airborne buddy tells me. “He would crawl through guts and nails and shit and still keep going.”
In the police report:
In the autopsy report:
Cause of death: undetermined.
In a message from his ex-wife:
“I can tell you .. that on two different occasions I had found Greg in the same condition, in the same position. Once in our family room. And the other time in our hot tub building outdoors. That time I had to call an ambulance because he was unresponsive. It was in the wintertime, and when they finally got him on the gurney & outside where the air was cold, he started choking, sat straight up & said, “What’s going on?” He refused to let them take him to the hospital & had to sign a statement to that effect. I told him the next day I was going to call his doctor about the medications. And (this is the first time he had ever “threatened” me) he shook his fist in my face and said “Don’t you dare. If you do, she’ll stop giving me the pain medications.”
“I know what I’m doing.”
The police mailed me crime scene photos of my brother’s body.
They let me see the putrefactive decay in his jaw.
They let me see the fixed lividity in his chest where the blood, no longer pumping, pooled like blooming bruises.
They let me see his penis, bloated with carbon dioxide, as ridiculous as a balloon animal.
But not the pill count. They redacted the pill count. Suicide is a medical record.
May 15, 1990, in the psych ward after I swallowed all my epilepsy pills, psychiatrists interrogated me for a precipitating event:
“He could never sleep,” Greg’s Airborne buddy told me. “He was up making peanut butter sandwiches 3 or 4 times a night. He just never slept. That will kill a person, you know.”
“Is there any chance in your mind that he committed suicide?” I spit the words out fast, afraid he will cut me off.
“Honey,” he says, “You could have pushed him out of the plane without a parachute, and he would have landed. Your brother was tough. He was a tough man. You couldn’t take the parachute off him.”
He means an Army parachute: Jump School, Fort Benning, 1975, my brother graduated top of his class, Iron Mike Award, the best of the best.
I don’t tell him about the Army records.
October 18, 1976:
March 24, 1977:
June 29, 1977, note in the Army medical chart:
I don’t tell him I practiced rolling off the couch the way the Medical Examiner described it in the autopsy report. Even the best of the best couldn’t stick that landing. No way he did it doped up on narcotics with a bad back and a bum knee. For weeks, my hips and knees bloomed purple. He got down in that position. He knew he was dying.
Or how, when the crime scene photos arrived in the mail from the Cedar Rapids Police, I stripped nude and crouched in front of my couch in an identical position to my brother’s body, the fetal position, the cops called it. I curled the fingers of my left hand—all except the middle one, which I extended almost straight, as he did in that last moment, one final fuck you on his way into eternity.
“What if he did it because he was afraid they would take away his painkillers in prison?”
What if my brother killed himself because he was disabled?
“That’s a real possibility.”
May 18, 1990, movie night in the psych ward.
Molly Ringwald as Lonnie, all ginger bob and pink scars on her wrist, sneaking out her bedroom window with boyfriend Rick. Star-crossed lovers, forbidden.
They ride and ride and ride on his motorcycle, past a car dealership, Pat Benatar soundtrack.
They almost crash head-on into a car.
They almost crash into a train.
“Rick you’re gonna kill us!” Lonnie screams as the train whooshes by.
“We could have kept going,” Rick says. “We could have done it.”
“It’s not that easy, Rick. We could have ended up crippled, or lost an arm or leg or both, and then we’d have to depend on our parents for the rest of our lives.”
It was better to be dead than disabled.
They sneak into Lonnie’s garage, hot-wire the family car, fall asleep on the front seat.
The next morning, their corpses are whole, beautiful, perfect, radiant, dead. Not disabled.
May 15, 1940, Virginia Woolf’s diary:
An appeal last night for home defence—against parachutists. L. says he’ll join. An acid conversation. Our nerves are harassed—mine at least: L. evidently relieved by the chance of doing something. Gun & uniform to me slightly ridiculous. Behind that the strain: this morning we discussed suicide if Hitler lands. Jews beaten up. What point in waiting? Better shut the garage doors. This is a sensible, rather matter of fact talk.
No, I don’t want the garage to see the end of me. I’ve a wish for 10 years more, & to write my book …
This idea struck me: the army is the body: I am the brain. Thinking is my fighting.
The ENT orders a balance test, spinning me blindfolded in a rotary chair in a dark booth. I lose all sense of space and time. I am a paratrooper, jumping from a plane in the dark of night.
“It’s not your vestibular system,” he says. “It’s your brain.”
The army is the body.
It’s not just my brain. I am losing on all fronts.
“It looks like a bullet shot clean through me,” I say to my husband, pointing at the silvery hole in my spinal cord. A syrinx, a cavity, like in a tooth.
Syringomyelia, caused by my Chiari I Malformation. A birth defect, like I was doomed just by being born. My brain is occupying my body now.
The syrinx is a scorched earth campaign, destroying neurons, burning up my spinal cord until it paralyzes me. It could take years. Could take days. I could wake up tomorrow unable to swallow.
I picture a nurse hoisting me into a bathtub, flash to my brother clicking the lock on the bathroom door, unbuttoning my pajamas.
Pistachio porcelain bathtub. Chipped plaster. Calk thick as toothpaste fresh out of the tube.
I am eight years old. David Copperfield is on the television in the living room. Can David do it? Can David Copperfield make the Statue of Liberty disappear?
My brother’s ribcage crushing mine. His hipbones thrusting against my hipbones, hard as my father’s belt buckle, but I can take it because I figured out how to make pain move.
Straight line from the hole between my legs to the empty socket where my molar used to be. The socket only feels good when I stick my tongue in it. My brother is licking the socket, licking the socket, licking the socket. My tooth socket can take what I can’t.
And then one day it occurred to me that I could show with magic how we take our freedom for granted. Sometimes we don’t realize how important something is until it’s gone. So I asked our government for permission to let me make the Statue of Liberty disappear—just for a few minutes.
I thought if we faced emptiness where for as long as we can remember, that great lady has lifted her lamp, why then, we might imagine what the world would be like without freedom, and we’d realize how precious our freedom really was.
But nobody in that live audience is facing emptiness. People cheer. People applaud. One old lady shouts, “I have never seen a Statue of Liberty disappear like that one before!”
They are glad the statue vanished. They are glad for the empty harbor. Nobody cheers for getting tricked. Nobody wants to be a fool. Which means they believe the statue is really gone. They believe in magic.
They want freedom subject to magical forces.
Syringomyelia restrictions: No running, no jumping, no prolonged standing, no strenuous activity, no lifting, no overhead work, no push-ups, no pull-ups. “And no parachute jumping,” my neurologist jokes.
My neck burns. My shoulders burn. Vertebrae topple out of place like a Jenga tower. I can’t sleep. Can’t sit. Can’t stand. In syringomyelia speak, it’s called the cape. I call it my parachute harness. I am strapped in. The pain protects me, keeps me from falling falling falling. It reminds me: take my epilepsy meds. It reminds me: walk slow. tick tick tick tick tick goes the bomb inside my spine. The army is the body.
The doctors predict my future: gabapentin and morphine. Same drugs my brother took after his spine got crushed making the machines that harvest the corn to make ethanol. When was the last time you heard anything good about carbon monoxide? Down down down down the rabbit hole I will fall, into Apartment A.
Crouched in front of the couch in the fetal position. My birth defect is going to kill me. My birth is going to be my end.
Thinking is my fighting. Thinking is my fighting. Thinking is my fighting.
I begin to hear voices.
David Copperfield is casting magic spells through the Walker Center Weather Tower.
I think I think I think David Copperfield cast a spell on my spine.
My neurologist prescribes me a new epilepsy med. The pill of last resort, I call it. No generic. Poor insurance coverage. Sometimes thousands of dollars for a 90-day supply.
“I am sucking us dry,” I tell my husband. I have no job. No hope of a job. I made $50 last year.
Sucking us dry: that’s what my father used to tell me every time a new hospital bill landed in the mailbox. Now I say it, like something I inherited, something in my genes that makes me turn on myself.
I am afraid of being disabled under President Trump.
They put us to sleep with our own medications. They put us to sleep.
“How terrible that you never got to grow up and live your adult life,” an anesthesiologist says, when he asks if I have a ride home from my root canal, and I tell him I cannot drive because of epilepsy.
When the Propofol hits, I feel myself floating out through my tooth socket, the same way I did with my brother, the same way I still do when I have sex. I tug at the oxygen mask, wriggle in the chair. This feels just like—
Baby Grows Up. I despised that doll. She grew when she sucked her magic baby bottle and shrank back to baby size when you yanked a cord from the base of her spine. I knew it was a lie: adults could make you all grown up by sticking things in your mouth, but they could never make you a baby again.
I fed her bottle, yanked her spinal cord, fed her bottle, yanked her spinal cord, over and over like a hex.
The dentist stands very clean and impersonal in his long white overcoat. He tells one not to cross one’s legs and arranges a bit under one’s chin. Then the aneasthetist comes in with his bag as clean and impersonal as the dentist and only as black as the other is white. Both seem to wear uniform and to belong to some separate order of humanity, some third sex … These are the people who manage the embarcations and disembarcations of the human spirit; these are they who stand on the border between life and death forwarding the spirit from one to the other with clean impersonal antiseptic hands.
–Virginia Woolf, “Gas”
“Do you know why I love Propofol?” I tell my husband. “It doesn’t make you high. It doesn’t drag you down. It doesn’t make you feel anything. It’s like the coffin lid slams shut, and–” I snap my fingers. “You’re dead.”
Every time I see the dentist now, I hope for a root canal. I hope for any procedure that justifies Propofol. My dentist is my dealer, and he doesn’t even know it. “If I could buy that shit over the counter,” I tell my husband. “I would have a problem.”
Later, I learn that survivors of sexual trauma are attracted to the dissociative state it induces. I love a drug that feels just like sex with my brother. I love a drug that feels like abuse.
I write Dr. Omar Manejwala, an expert in Propofol addiction. I ask, “Is it suicidal ideation?”
“I think that this is a primitive defense,” he writes back. “It allows for self-denial without the moral implications of suicide.”
“You’ll feel it first in your fingers,” the neurologist says, making a C with one pointer finger and thumb and rubbing it with the other.
How do I kill myself if I can’t use my hands?
December 1983: My brother Jimmy fired a bullet through his heart. Temperature: 30 degrees below zero, cold enough to crystallize diesel, clog fuel injectors, slow school buses to a creep. Cars were scattered like abandoned toys in the streets, as if the Rapture had translated their drivers straight out of the bucket seats.
At AAA: distress tickets piled up three inches thick. Mom & Pop towing services turned callers away.
Jimmy’s horoscope in the Cedar Rapids Gazette: a phone call brings good news.
His father—his real father, I was told— rendered his tow truck a super vehicle: tank filled with Diesel 1, impervious to cold. All night, every hour on the hour, he flipped the ignition to heat the engine.
Jimmy knew about the pile of distress tickets. He knew his father could save the cars or his son, but not both. He knew, and he pointed the gun barrel at his heart and fired.
Jimmy died because the cars stopped.
(When was the last time you heard anything good about carbon monoxide?)
Etched into his gravestone: If I go to heaven I earned it; If I go to hell I deserved it.
“I knew your brother as Jim Higgins first,” his elementary school friend tells me. “Now this is where it gets sketchy because he had his name changed and he talked about him having other toys at his other house so I don’t really remember the details … I think if anything messed him up was a series of name changes because that became a stumbling block for a lot of the kids in our class in fact when we speak of him still we always mention the name changes.”
He means when my father rescinded his adoption.
“Why did dad do it?” I asked my mother.
“Child support,” she said.
Jimmy was a burden, too. Jimmy was draining my father dry.
May 20, 1990: a psychiatric nurse told me to be kinder to my father, to show support and love for him, to be reasonable.
He knew about my black eye, the one my mother lied about to cover up:
He knew about the cuts all up and down my arms, scoring from dull butter knives I sawed back and forth across my skin.
He knew my father was under investigation for child abuse.
He knew that, and he told me: you are the burden. People who swallow the pills are always the burden.
May 20, 2016: I sign a last will and testament. I want my papers in order before I lose control of my hands. I want my father written out of it.
Thy will is not done, I say out loud to my psychiatric chart. My will is done.
I message my old writing mentor a letter from Virginia Woolf to Beatrice Webb, April 8, 1931:
I wanted to tell you but was too shy, how much I was pleased by your views upon the possible justification of suicide. Having made the attempt myself, from the best of motives as I thought – not to be a burden on my husband – the conventional accusation of cowardice and sin has always rather rankled.
He messages back with a quote from Christopher Isherwood:
There is one question which we seldom ask each other directly: it is too brutal. And yet it is the only question worth asking our fellow-travelers. What makes you go on living? Why don’t you kill yourself? Why is all this bearable? What makes you bear it? … You did whatever was next on the list. A meal to be eaten. Chapter eleven to be written. The telephone rings. You go off somewhere in a taxi. There is one’s job. There are amusements. There are people. There are books. There are things to be bought in shops. There is always something new. There has to be. Otherwise, the balance would be upset, the tension would break.
We talk through other people.
I can’t say, I want to _______ ________.
He can’t say, please don’t _______ ________.
I don’t know why I dump this on him. I don’t know why I choose him. I have always been like this. I choose the wrong people. I intrude. I send inappropriate messages. I do social media all wrong. I do social all wrong.
A friend says my Facebook posts are too sad. I don’t sound right. I am becoming a burden.
“I look at everyone’s Facebook feed,” I tell my husband. “They take vacations. They go to concerts.”
“We can’t do that,” I say. “Because of my medical bills.”
If I die, you can take vacations. If I die, you can live.
I don’t know whose thoughts are mine and whose aren’t anymore.
Last year, I got the paperwork to donate my body to a body farm, but I got stuck on one checkbox:
____Trauma and advanced research request: Your initials indicate that you permit your remains to be used for trauma.
“It’s too sad,” a friend said. “Haven’t you had enough?”
“But I’ll be dead,” I said. “Does it matter?”
But it does matter. The act of donation means it matters. I want my body to be a blessing to somebody. Solve a murder, maybe. Put a killer behind bars.
I think of Virginia Woolf’s body, tumbling in the current of the River Ouse after she loaded her pocket with rocks and waded into the water.
I think of Greg, his balloon-animal penis.
Jimmy turning blue in air so cold it crystallized diesel.
I want my death to be a blessing to somebody, but I want it to be a blessing to me, too.
No initials on the ____.
I am excited to announce the winners of the Able in this Diverse Universe essay contest!
With so many incredible submissions, it was a difficult decision. It moved me beyond words to read so many raw, powerful, emotional, and beautiful essays about the disability experience. Thank you to everyone who submitted. Remember, you are all winners, because each and every one of you helped little Noah Ainslie get his therapy dog!
Without further ado, the winners are …
1st Place: joining a stream, grace is still possible by seeley quest (this essay is not published on the site, but when/if it publishes elsewhere, I will be sure to link it!)
This stream of consciousness essay moves like a literal stream through the topography of the disability experience, cutting through layers of politics, identity, and sexuality. The writing is bold and fearless, with moments so revelatory, they carry away existing assumptions about disability like a flood.
seeley quest lived in the San Francisco Bay Area from 1998 till 2015, and is now in a nomadic period. Sie worked at Cody’s Books and Modern Times Bookstore for twelve years, and often performed around the Bay Area, last featuring in the ’14 LitCrawl. Seeley’s also toured to present in D.C. for the True Spirit Conference, L.A. for Trans/Giving, NYC for the Stages Transgender Theater Festival, New Orleans for Saints and Sinners Literary Festival, and to Vancouver, Toronto, and many other U.S. cities and colleges. Sie has poems published in the book Disability Culture and Community Performance: Find a Strange and Twisted Shape, and issue 2 of of Them: a Trans Lit Journal. More of hir work’s at http://sinsinvalid.org/.
2nd Place: Beauty in Mind by Sean Mahoney
Beauty in Mind is a fantastically fragmentary, speculative, and gorgeous essay that meditates on how illness both alters the human experience and is part of it. Powerful, haunting passages reveal how illness creeps into every corner of the psyche.
Sean J Mahoney lives with his wife, her parents, two Uglydolls, and three dogs in Santa Ana, California. He works in geophysics. Out-boozed by Franciscan monks in Ireland. Swimming with Whale Sharks in Mexico. Sean believes that punk rock miraculously survives, that Judas was a way better singer than Jesus, and that diatomaceous earth is a not well known enough gardening marvel.
3rd Place: Like Echoes in the Mist by Lizz Schumer
Like Echoes in the Mist meditates on what it means to lose memories to the brain fog of fibromyalgia. Who are we without memory? What does it mean to move through the world as if managing someone else’s life? What does it mean to write nonfiction when memory is slipping away?
Lizz Schumer is a writer, artist and teacher living and working in Buffalo, N.Y. Her work deals largely with the interplay between the personal and universal, and how one’s personal development is influenced by both cultural and environmental factors. Lizz’s writing has appeared on Salon.com, XOJane.com, Thoughtcatalog.com, The Manifest-Station, Wordgathering, Breath & Shadow, Connotation Press, Minerva Rising, Love Your Rebellion and others. She can be found at lizzschumer.com, @eschumer on Twitter, @lizzschumer on Instagram and Facebook.com/authorlizzschumer
Truthfully, it was so hard to choose! Thank you again to everyone who submitted!
The day Prince died, I was walking to the audiologist office to pick out hearing aids, Purple Rain playing on my purple iPod, my lipstick-red walking cane tapping its drumbeat on the sidewalk, vibrating through my wrist bones to my elbow bones to my shoulders to my clavicles to my brain, telling me: I am whole. Without my cane, without that drumbeat, my brain gets confused: Where is my musical limb?
The cane makes music just for me. When I walk to the beat, I drum to the beat. Doesn’t matter about my hearing anymore. I am a walking musical instrument.
Except it does matter, because certain music saved my life. Certain music still saves my life.
Maybe I can hear Prince like I did when I was a kid, I thought. How much of his music am I missing? What frequency is his voice?
I wanted a purple hearing aid to match my pastel purple and pink hair. Unicorn hair.
Later, in the office, disappointment: hearing aids tiny as earrings, designed to be hidden behind my ear lobe like something shameful, scattered across the desk in colors as dull as thumb drives or computer parts: boring blue, boring silver, boring beige.
Then I saw the flash of red. Hot red. Carousel red. Like Little Red Corvettes for my ears. They will clash with my pink glitter glasses, I thought. They will clash with my mint green cat-eyes. They will clash with my hair.
“You’re going to want the red ones,” the audiologist said. She was looking at my handmade pageboy hat, white with black vintage typewriters printed on it, the one I sewed because it would make me stand out, the same reason I sew all my skirts, bags, and other clothes. I have to be different. I love to be different. I need to be different.
She pointed to my cane. “You’re a colorful personality. I can tell.”
“The colorful ones aren’t for everyone. But they’re for you.”
They are for me.
As a kid growing up with epilepsy, I made myself colorful as a survival strategy.
Age 14, a sharp, distinct, intentional before and after: Before seizures, I was the shy, quiet girl drowning in baggy kitten sweatshirts and Wrangler jeans; after seizures, I showed up to school in fishnets, combat boots, heavy black eyeliner, and dyed red-platinum-orange-pink-black (whatever fit the mood that week) hair. While the other kids whispered Karrie is on drugs, Karrie is nuts, Karrie pisses her pants, Karrie is faking, Karrie is a freak, I said fuck it. I will show them a freak. My clothes got weirder. My writing got weirder. My musical tastes got weirder. My art got weirder. I got weirder.
I didn’t know until years later that Prince did the same damn thing. Prince had epilepsy, too. Prince got freaky as survival strategy.
In 2009, he talked about his epilepsy publicly for the first time on PBS with Tavis Smiley. “From that point on,” he said, “I’ve been having to deal with a lot of things, getting teased a lot in school. And early in my career I tried to compensate by being as flashy as I could and as noisy as I could.”
Prince was a walking disability poetics.
After that, when I listened to his music, I thought: Prince has a Sparkle Brain.
Sparkle Brain. My term for my Epileptic, Bipolar, Chiarian, PTSD-brain–for any neurodivergent brain. Sparkle Brain is big tent. Autistic brains are sparkly. Psychogenic Non-Epileptic Seizure brains are sparkly. Sensory disordered brains are sparkly. Neurodiversity in all its forms is sparkly.
I mean sparkle literally: my brain is extra electric. When my brain lights up, it sparkles like it’s 1999.
But I mean it figuratively, too: sparkly, like a disco ball. A Sparkle Brain is shiny. A Sparkle Brain is beautiful.
Sparkle Brain is my fuck you to neurologists who only see me as broken. My fuck you to editors who want me to cut epilepsy out of my writing because they don’t think it’s relevant, they don’t think it sells, they don’t think it’s sexy. My fuck you to neurotypicals who think I need to be fixed.
Sparkle Brain is Disability Poetics.
When I was fifteen, the neurologists told me not to dream big. They said I lacked realism in my aspirations.
My aspirations: earn a PHD, write books.
Prince is the affirmative defense.
Prince had a Sparkle Brain. Prince dreamed big. Prince made music so sparkly the neurotypicals are jelly.
I wish I had known about his epilepsy back then. As a working class (and often poor) kid with parents who didn’t get it and didn’t have the money or time or education to advocate, pre-ADA, I believed what the neurologists said. Don’t dream big. Don’t dream big. Don’t dream big. I heard it in my head like an ear worm, like tinnitus made of words.
Last year, after the largest writing organization in the country, AWP, rejected every single disability panel for its annual conference, I filed an ADA complaint, and the Department of Justice mailed me a letter explaining they lacked resources to investigate. On the second page: a list of assisted living facilities and voc rehab programs.
Go bag stuff at Goodwill, they were saying. They wanted to funnel me into the sub-minimum wage disabled labor pool.
Don’t dream big. May lack realism in her aspirations.
Lately, it’s been hard to love my Sparkle Brain. I am struggling with word-finding, suspected auditory processing disorder, dizziness (hence, the walking cane), falls, eye-tracking problems, tinnitus, more frequent seizures, and fatigue.
When I got accepted into a PHD program, I asked friends for advice seeking accommodations. They said, “Whatever you do, do not use the word ‘cognitive.’ Ever. They will think you are dumb.”
Even among people with disabilities, there’s an ableist hierarchy: So long as your brain is OK, you are OK.
I bought into that shit. I internalized it. I was ashamed.
Once, I told a friend, “I don’t have a learning disability. I have cognitive disabilities.”
Later, when I found out my (maybe) auditory processing disorder is a learning disability, I thought: Will anyone ever believe me about my high IQ? Will people think I am stupid?
That’s internalized ableism, and that’s exactly why I can’t keep this stuff secret and call it self-protection. It isn’t protection; it’s destruction.
What would Prince say? He would say: get freaky with it. Make it shiny. Make it loud. Make it your art.
Sparkle Brain is intersectional.
There was a boy I liked in high school. He told people I flopped like a fish. I dragged him by the arm into the hallway and made him say it to my face. He refused at first, and then, cheeks flushed and head hung in shame, he mumbled it.
“Look me in the eye,” I said. “And say it again. I dare you.”
And he did. And I punched him.
Preach whatever you want about nonviolence, but he never said it again.
He got beat up by a girl.
And not just any girl, but the epileptic girl.
That was survival strategy, too: Defy gender expectations.
Being epileptic was one thing. Being a girl with epilepsy was another. I hated being a girl. I didn’t want to be a boy, but I sure as hell didn’t want to be a girl.
Prince in that video for When Doves Cry, the way he crawled across that floor, all lean and sinewy, but soft, too. Boy, girl, it didn’t fucking matter.
I had sex for the first time when I was eight, or at least that’s the first time I can corroborate. It was 1983. Little Red Corvette was a hit. My brother, the fast-car-driving mechanophiliac was sleeping on our couch.
I was his Little Red Corvette.
If you want to get away with rape, rape an epileptic. Nobody believes us. Nobody cares. We are crazy. We are hysterical.
We are unreliable witnesses. We have bad memories. We are liars.
In high school, a teacher–not just any teacher, but the most popular high school baseball coach in the state, our very own Cedar Rapids, Iowa, version of goddamned Jerry Sandusky–forced his hand down the front of my jeans into my panties, yanked me toward him by my waistband, and whispered so close to my face I could taste his sour breath, “I know things aren’t right at home.”
He said it like a threat. Nobody will believe you. You’re the freak. The epileptic. The poor, white trash. The kid with the father who skids into the driveway in his rusty Chevy pickup, breath reeking of alcohol. I know things aren’t right at home.
Later, when I overdosed on my epilepsy meds, he sent packets of math homework to the psych ward and refused to tutor me.
Don’t dream big. May lack realism in her aspirations.
When he died and everyone was posting eulogies on Facebook, I spilled it. “I waited half a lifetime to tell this story,” I said, “because none of you would have ever believed it.”
He got a baseball field named after him. I got unfriended.
Once, my father heard Darling Nikki blasting from my bedroom, and he called it trash. “No daughter of mine is going to play music like that.”
Music like that. Music that made me feel like sex was OK, that I was OK, that my body wasn’t filthy, ruined, that maybe it even held secret powers, that I knew things the other kids didn’t. That I wasn’t trash.
You have to understand: sexual abuse sometimes felt good. It’s a normal physiological response. I knew stuff the other kids didn’t.
It wasn’t just the lyrics. It was that voice. God, the way Prince could grind with his voice. My father heard a man celebrating a woman grinding. My father heard something threatening to the social order in our house, where he ruled over my mother, my sister, and me with an iron fist and the buckle end of a belt.
That video for When Doves Cry, when Prince pulls his father off his mother. Violence. Sex. Ambiguous gender.
Music like that. My father screamed at me when he caught me with my hands in my underpants. I was seven or eight. I had already been to the doctor for unexplained bleeding, unexplained infections. Nobody made the connection with my brother. I was shameful. I was sinful. I got a beating with the buckle end of the belt.
Later, when the truth about my brother came out, my father didn’t believe it. He visited him in secret. A couple years ago, I mapped his criminal traffic violations to prove it. He visited my brother, praised my brother, called him his favorite son.
My father was more disgusted about me touching myself than my brother touching me.
Prince told me, fuck that shit.
My brother taught me my value was in my body, in my looks–not my brain.
My father did, too. Once, as the entire extended family watched from the dinner table, he lifted my skirt until my panties were showing, and said, “The boys must like it.”
When I got prescribed a walking cane, I read shit like this on the Internet. I thought: I will never be sexy again.
Strangers feel entitled to tell me: You would be so pretty without the cane.
But you know what? Prince had a walking cane. He had a goddamned sparkly rhinestoned cane. And he was still sexy AF, and only liars would deny it.
Prince is the affirmative defense, always.
Prince was a walking, sparkly disability poetics.
I have a collection of walking canes now. All loud, all colorful.
When a fellow Sparkle Brain dies young, I take it hard. Sparkle Brains are 11x more likely to leave this earth too soon. They are more likely to die if they abuse drugs than non-sparkles who do. They are more likely to commit suicide.
The Sparkle Life is a tough life. The Sparkle Life burns out fast, like a high-wattage bulb.
I feel the clock ticking every minute of every day. I swear I even hear it: tick tick tick tick tick tick tick tick tick tick tick tick tick tick.
My first thought when I read Prince died: Did the epilepsy get him?
When I shared this fear with friends, they said things like, “I heard it was a drug overdose.” “He was addicted to painkillers.” “It would be sadder if it were a drug overdose.”
They do not know the fear. They do not hear the clock ticking like I do.
They do not understand: his disabilities cannot be erased. Even if it was drugs, it is still about disability. Pain is disability. Addiction is disability. And epileptics, if they do abuse drugs, are more likely to die young.
The past few days, friends have posted tributes: Prince helped them love their broken, weird selves, they say. It’s beautiful, how he did that. But they leave out his epilepsy, the whole reason he made himself so colorful in the first place. They leave out the disability poetics.
Prince was intersectional in more ways than one.
As a straight, white woman, my experience of disability is different from an LGBTQA person of color, for a lot of reasons, and I want to be blunt about that, because so often, race, sexual orientation, and gender identity get erased from the disability experience. Prince meant a lot to me, but there were a lot of things he couldn’t mean to me, not like he did to Ekundayo Afolayan or Jack Qu’emi Gutiérrez.
Read those stories. Learn. Do not erase race from the story. Do not erase gender identity and sexual orientation. Do not erase intersectionality.
My able friends were surprised when I posted on Facebook about Prince’s Sparkle Brain.
They might have read about it, they said, but they forgot.
But we, the Sparkle Brains, we never forgot. It meant everything.
When I got home from the audiologist, the news about Prince broke. It’s too late, I thought. Even with hearing aids, I will never hear him like I used to. It will never be the same.
But the truth is, I never understood music. I never heard it like other people hear it. In elementary school, when we learned the keyboards, I didn’t understand the scales. I had trouble discerning subtle differences in tones. I memorized finger positions–visually, I mean, like snapshots. I heard notes as beats.
It’s how I process poetry, too. I do not hear stresses. I struggle with scansion.
That’s the auditory processing disorder. The learning disability. The one I refuse to be ashamed of.
The one that means maybe I will always hear the music like I used to. Maybe even with my hearing loss, I am not losing anything. Maybe sometimes a learning disability means you learn things other people don’t.
The day after Prince died, I walked with my purple cane and cried and cried, blasting Darling Nikki and Little Red Corvette on my iPod.
I felt the tick tick tick tick tick tick tick tick tick tick acutely. I felt the drumbeat of my cane. I am a walking musical instrument, I thought. My body makes music just for me.
I am making music with Prince.
Content warning: ableism, suicide, sexual abuse
Last night, a stranger said, “Go kill yourself.”
Does he know I have already tried?
In my newsfeed, headline after headline about Zika and abortion. Sentences like this one: “Zika could easily entrap American women in areas with standing water that breeds mosquitoes, closed clinics, no access to the later abortions a microcephaly diagnosis might require.”
I have a neural tube birth defect. I have a too-small skull and a screwed-up, epileptic brain. What do able people think should have been required for me?
Able people pretend, Of course we don’t mean you!
But they do. They do.
Before able people know I am epileptic: You are so selfish for not wanting a child!
After able people know I am epileptic: You are so selfless for sparing a child a disability!
It wasn’t that long ago that I could have been locked up and sterilized. In my lifetime, even.
Able people did that. Able people still do that, not with laws but with shame. Instead of locking me up, they tell me it’s so, so good that I don’t want to reproduce.
Which, when you think about it, is a lot like saying I should never have been born. They want me erased from the genetic record. They want me contained, like a virus.
I am pro-choice.
I am not talking about choice.
I am talking about how it feels as a disabled person to witness panic about disabled bodies coming into this world.
I am not talking about the nightmare Catch-22 of being forbidden access to birth control and abortion and being told not to get pregnant.
I am talking about how it feels as a disabled person to witness panic about disabled bodies coming into this world.
You say: But we don’t mean all disabled babies! Zika is different!
Let me repeat:
Before able people know I am epileptic: You are so selfish for not wanting a child!
After able people know I am epileptic: You are so selfless for sparing a child a disability!
It’s not just Zika.
Ever since I got my walking cane, able people call it a weapon. They joke that I can use it to beat people up. They joke that I should get one with a concealed sword.
I started joking about it, too, even though I don’t think I could beat up anyone with my cane. I need the cane. I fall without the cane.
Still, something in that image of my cane as an open-carry weapon speaks to me. I like the idea of my mobility device as a weapon. I like it because I know, deep down, my basic existence is under attack every second of every day. I am lucky to be alive. I am lucky able people let me be born at all.
If you have been thinking about submitting to the Able in this Diverse Universe essay contest, I have good news. The deadline has been extended to March 31st, and the submission fee has been dropped to $10. EEEEK, what are you waiting for?
Everything else remains the same: submit up to 2,000 words of nonfiction on ableism, disability, access, and overcoming.
I am very open to experimental writing and to non-traditional definitions of nonfiction, so get speculative if you want. Push the boundaries. Or not. Traditional is good, too. I am also excited about diverse interpretations of the themes.
All submissions are read with no identifying information, so don’t hold back. It’s a win-win. Help Noah get his therapy dog, and maybe win a cash prize for your writing, too!
My co-judges are amazing: neuroscientist and writer Dr. Kwame Brown, mental wellness writer and former international model Jackie Cioffa, Art Saves Lives International director and artist Charlotte Farhan. Seriously good people!
For more information about Noah and his therapy dog, or if you are interested in supporting Noah but would rather donate directly, here is the Noah Ainslie’s Service Dog Fund GoFundMe page.
For awhile, I carried my brother’s crime scene photos everywhere. I couldn’t bear to leave them–him–behind. What if our building burned down? What if the earthquake hit? Then I couldn’t bear to carry the physical photos because it could damage them. The police aren’t holding onto those negatives forever. I scanned all 24, saved them to a memory card that I tucked into my purse, and texted them to myself, one by one, over the course of a few weeks.
Scroll through my iPhone camera roll, and there they are: my brother’s apartment door, mixed in with photos of the temple doors in Salt Lake City; my brother’s body in fetal position, jumbled up with downtown graffiti, like I stumbled onto his corpse on the sidewalk.
Ever since the pictures arrived in the mail, I have these panic attacks: What if the police find them? What if they think I killed him? Who the hell stores pictures of a corpse in their filing cabinet besides a serial killer or a cop?
Now that I have them in my phone, the panics are worse. It happened today, on a walk: What if I lose my phone and get arrested for murder? The scenario always ends the same way: my arrest. I am the one on the lam, not my brother. I am the one wanted for a crime, not my brother.
I know it’s not rational: The police released those photos to me. I was 1,915 miles away when my brother died. And he wasn’t even murdered.
Except he was.
On the day I got the photos in the mail, I stripped nude and crouched in front of my couch in an identical position to the one in which he was found, the fetal position, the cops called it. I curled the fingers of my left hand—all except the middle one, which I extended almost straight, as he did in his last moment, one final fuck you on his way into eternity.
I felt that fuck you. I felt it hard.
“Looking at those photos fucked up everything,” I tell my husband. He knows what I mean: the writing, everything. Nothing is the same. I haven’t been the same.
“I’m glad I saw them,” I say, and I mean it. “But I think, finally, I can say I took my research too far.”
I carry my brother’s body around. I carry this secret around. The photos fucked up everything.